Tag Archives: rare genetic condition

My name is Samuel and I need your help. I have a rare genetic condition which causes severe epilepsy and I have many seizures every day. I am severely disabled and despite being almost 2, I’m really just like a little baby. I regularly visit my friends at Julia’s House, Dorset’s Children’s Hospice, to give my Mum a bit of a break but also because I love having play time and cuddles with the lovely nurses and carers.

Mum says that they’ve changed our lives. I think my Mum was feeling a bit lonely and lost before, but since we joined the Julia’s House community we have been overwhelmed with all their kindness and support.

People think that a hospice is just where people go when they are very poorly and are at the end of their illness. But that isn’t true. To me and my friends, Julia’s House is the best nursery in the world and we are so lucky to have them on our doorstep.

To thank the wonderful people at Julia’s House for all their love and kindness, my Mum and Dad will be running the Hospice 5k in Bournemouth on 21 October. Mum and Dad aren’t very fit, so I think they are quite nervous, but they are determined to try to cross the finish line in one piece!
Why am I telling you all this? I’m hoping that you, your colleagues, friends and family can dig deep and help children like me and families like ours by sponsoring my Mum and Dad at: http://uk.virginmoneygiving.com/team/Team_Sam

However small your donation, it will go a long way to help Julia’s House continue to do their fantastic work.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it